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Everything posted by danikali

  1. I have IC..........struggling with the diet for that and for Celiac is extra hard. But for some reason, citrus doesn't really bother me. It's more just things like smoking (kills my bladder), alcohol, coffee, SUGAR (VERY BAD), and gluten, even a tiny amount WILL KILLLLLLLLLLLLLLLLLLLLLLLL ME!!! Does anyone else with bladder problems notice this? That when they get glutened, or eat it, it doesn't only give them the 'runs' but it kills your kidneys and bladder, and the whole system? But def. get tested for IC. And stop taking antibiotics.....they only bring them back. Take some allergen free acidopholis.....get your diet completely clean, and then find out which foods might make it worse. And if it is UTI's, it just means your immune system is not working as it should and antibiotics will seriously only make it worse.
  2. Well, it for sure always lasts about a week. It's not just digestive things that I get though, it's disrupts my whole system....I get muscle aches, feels like I have black and blue marks all over my body, sore insides, pretty much everything hurts. It always last at least 7 days but I was just wondering if anyone knew of it lasting longer......This time was realllllly bad....and all of the body aches and everything, all the 'weird' symptoms are gone, but now I just have a weak digestive tract all over again.
  3. The blood tests aren't always accurate. I got negative blood tests and a positive biopsy.... ......do the diet (to a T) and see how you feel. Doctor's tests for celiac disease or gluten problems aren't always the best measure.
  4. Well I had gluten not last Friday, but the Friday before that..........I was extremely bad last week, and it has gotten better, but I still keepg etting bad gas pains in my back and lower abdomen, I'm still extremely bloated, and I'm still naseous.........how long does it take you to get 'better' after you get sick from eating gluten?
  5. I was just wondering if everyone could post a little bit about what happens when they get glutened........ I haven't been like this for a LONG time and I know I'm being a little baby here (for those of you who keep reading my reccent posts), but it's been 10 whole days and I'm not better yet! I used to think it only took about a week, but now it seems like it's going on forever, no matter what I do to speed up to process! But if you guys tell me that it sometimes take you this long to get over it , then I'll at least feel better knowing it's not some like bad bad thing that will never go away! (I know, I'm a total pesamist now, but when I'm sick, it's hard not to wonder 'what if') So any thoughts or advice. I'm not really new to this, but like I said, it has only happened two times in the past 8 or 9 months or so, so when I get this bad again, I get mad/scared/frustrated..........Thanks guys...........
  6. haha thanks. Thanks for the tips on making it a little better. Can you eat real cheese? Or you added more soy cheese on it? Does soy cheese taste like regular cheese? I haven't tried it yet, but I'm excited because cheese used to by my favorite food, especially the mozeralla kind on pizzas. I'm from Chicago and Giordano's deep dish was my favorite. Talk about cheese!!!!!!!!!!!!!!!!!!!!!!!! MMMMMMMmmmmm
  7. Thanks Lisa. Yeah, I wonder what that 'syrupy' stuff could have been.....? See, this is when I get mad at myself because why didn't I ask the waitress? Or not eat it all together? I get so hungry I tell myself that I'm just being paronoid and I make up a reason to eat it anyway. It didn't taste like anything really.....I don't think... Anyway, you're the first person that understood that 'balloon' pressure, achy feeling before. It makes me sick just thinking about it. At least that part is over with. I can lay down now and nothing changes. I mean, that pressure is gone now. Thanks for helping.
  8. Hi everyone. YES, I used to have horrible back pains when I was eating gluten. Honestly, I had horrible EVERYTHING! I mean, everything ached. That's why I felt like I was dying! I really thought that my life was going to end in my early 20's. Anyway, the only time I get any kind of ache is when I eat something bad. Other than that, I am so 100% perfect. I'm not joking. If I stick to veggies, fruit, meat, fish and rice (and I also use the food combining method which helps), I don't get sick AT ALL! I don't take any supplements anymore, unless for a short while, like acidopholis when I get glutened or something, but going from feeling like you're dying to feeling like there isn't anything in this world world I CAN'T DO, it's an amazing feeling. The only thing that gets me down these days is that I have to live so restricted to feel this way. I can't drink with my friends anymore when we go out (because of the cystits, I get horrible kidney pains if I drink, and of course the regular UTI symptoms), I can't eat junk food, processed, I can't have coffee (IC), I can't have dairy of course, and then I get mad and 'even' and decide to 'treat' myself and end up over doing it and making myself sick. Of course not on gluten, raaarely dairy, and I get stomach problems for a few days. Not gluten sick of course, I would never ever intentionally do that to myself. Gabby, yes, I've had IC pretty much since I started puberty but the doctors never figured it out. HORRIBLE. But doing my own research, I figured it out and got myself tested. (just like with celiac disease-same thing). The doctor gave me Elmiron, but right before I was going to take it, I found something on the IC Network forum. A girl posted her sucess with food combining and IC. So, I tried it, and it works! So I never actually took the Elmiron. It's sitting in my med. cabinet and I told my doc. about the food combining and said I would call him if I was going to start the meds. (I'm actually really against mainstream medical meds. unless it is the last option available and all else has completely failed.) And yes, if I have gluten, it also kills my kidneys, bladder and urethra for about a week! It's weird because I never know if gluten is going to affect my IC or the digestive system. Sometimes it's both. One time, my fiance's Mom made a ham for our pre-Thanksgiving Dinner and she put bourban on it. We all thought that bourban just comes from corn, plus we thought it would burn off in the oven. Well, that night I got up to go to the bathroom and I tried to pee and nothing came out but a drip and I looked down and my stomach was a balloon and my whole lower back and kidneys were throbbing, not to mention it burned down there! Then for the next 2-3 days, I had all of those symptoms and bleeding.....abdominal cramps like I had my period (I didn't of course)......oh my gosh, that was one of the worst. Anyway, a few months later I decided to check on bourban, because I still didn't understand why that happened to me. Sure enough, bourban is only about 40% corn derived (not totally sure on the percentage, so don't quote me) and the other 60% usually comes from rye or barley!!! These days, I eat EVERYTHING PLAIN, COMPLETELY, unless I can season it myself.
  9. Lisa, YES, that is exactly what I have been feeling like. When I lay or sit, it makes things hurt a million times worse because whatever is touching my body puts pressure on it and I feel like my insides are going to rupture. I picture them really swelled up inside of me, like a balloon, and when I lay down, the balloons are being squeezed and might pop! It's horrible! Is that what happens when you loose a lot of liquids? Because I know that I was 'going' so much this weekend and I remember asking myself every 10 minutes (running to the bathroom) where is all of this liquid coming from??? Because it sounded like a huge bucket full every time! Gross, I know. Well, today I'm feeling a little better because yesterday all I had was applesauce and rice and TONS of water. Today I'm just going to have apple juice mixed with water and maybe rice for dinner.. ....and I do remember eating chicken out on Friday (this all started on Saturday), and I thought it was kind of weird. I told them not to put anything on it but when I was eating it, I thought it was kind of weird because there was like this brown syrupy liquid around it and the chicken was really soft. I didn't eat it all because it was so weird and usually I finish my plate completely. Anyway, that's what I thought it was at first. But it just felt so much like when I was eating gluten that I thought I had to be glutened from the cereal the week before. Then I wonder, why didn't I get sick from eating those two bowls of Wheat free (with Oats) cereal if they didn't say gluten free?
  10. Hi, I reccently bought Amy's gfdf pizza. (It has soy cheese). Well, I haven't had soy in a long time, but I'm thinking of trying it. I am just getting over a really bad glutening (havne't had one since the early summer before this) so I'm kinda fasting on juice, water, applesauce and rice now. But when I'm back to feeling like myself, I want to try the pizza to treat myself. I was just wondering what you all thought of it. Was it good? How is soy cheese? Have any of you gotten really sick from it? (like cross contamination from gluten kinda sick?). I really want to try it when my appetite is back and my body is healthy again, but after being so sick again, I'm a little apprehensive. Thanks!
  11. Thanks for your replies. Well, whatever it was, it feels just like gluten. But I guess it doesn't matter anymore. I'm still feeling completely crappy today. I don't have anymore days at work to take off and I have a test in child psych. tonight so I can't even sleep it off! But I'm just going back to the way that I eat when I feel my best. The reason I thought it might be that cereal was because when I was eating gluten every once in a while, it would usually occur about 4-5 days after I ate it. And doesn't food poisening usually go away within 72 hours? It's been 6 days now. It's just identical to when I have gluten...........oh well.
  12. Thanks for your replies. Yeah, this is really horrible. Now I am back to being extremely paranoid about what goes into my mouth (which I guess is a good thing). I need to make a goal to stay completely healthy for one whole year.....okay, 6 months, and not slip up once on my diet! That means, no taking risks. But it's totally worth it because here I am, feeling like I'm back to square one!
  13. Hi Spunky, Thanks for replying. It's crazy because I used to live every day like this! Now when it happens, I freak out because I know what it feels like to be normal. It's just so horrible and I want it to end. It's crazy because it really really really messes me up! I mean, it starts out kind of like nothing, and then it gets worse and worse and worse and before I know it, I'm back to feeling like I'm 100 years old all from ONE GLUTENING!!!!
  14. Can I ask what the symptoms that you all get when you eat gluten? I am going through a problem right now. It starts out as just some regular stomach problems, then turns to 'D' (horrible all day long for like 2 days), then 'C' and then I get horrible body aches and I feel like my insides are swelled up (and my stomach is a balloon). This stays for like 5-7 days after the 'D'. That's why I'm altering my diet. Today all I'm going to have is applesauce during the day and rice at night. Can you guys tell me what happens to you? Not to mention irritable, tired and horrible cravings after the initial glutening. The whole process is like 2 weeks. What happens to you? I just want to know if anyone has such long problems like me? And different stages? And body aches? And if when you touch your body, anywhere, it aches. Laying down and sitting down KILL ME!
  15. Hmm...it's just weird because this is exactly how I feel when I get glutened. It's also weird because I don't have any other symptoms, like fever or anything. I just don't think it's the flu. No one else has ever had a really late reaction to gluten? GF4life, you said that your family ate the 'wheat free' cereal before and didn't get sick from the oats in them? I thought that anything that didn't say 'gluten free' and had oats in it pretty much means that it is completely contaminated with gluten grains. Maybe I'm wrong. I just hate feeling like this, and it's so bad that I get mad at myself for not knowing what I did to myself that made me feel like this. I am just positive it's not the flu. I don't know. I guess I just chalk it up to a BIG BIG BIG HIDDEN mistake and go back to my safe diet and not try anything new for a while..........
  16. Well I'm going through a bout right now. I eat plain rice cakes, homemade applesauce (boiled smashed apples) and usually that's it, but this time I might add chicken and carrot soup.
  17. Okay, I haven't had a question like this in a long time.....probably because I haven't felt this bad in a long time, and the last time I did, I knew what it was from. Okay, so 2 Sundays ago I ate some Puffins cereal that I thought was okay.....well, after having 2 bowls of it, I read the box again to just check out other things, and I noticed that it was NOT the gluten free cereal (the honey rice one is, I was eating the cinnimon one)....it was only WHEAT free. Sooooo I was really scared after I ate it because I know what happens when I eat gluten. Well, the next day I did a lemonade fast (lemonade cleanse) but only for 1 day and then I went back to eating regularly. My stomach wasn't normal the rest of the week, but I also had my 'monthly friend' so I kept telling myself it was that.....(even though I knew it wasn't because there is a difference in symptoms). But nothing really bad happened. So, come Saturday (almost a week after I ate the gluten), I started to have really bad 'D'......(I had it all week, but it was only once or twice a day, nothing too crazy). But as Saturday went on and Sunday came, it got 100 times worse. It was the REALLLLLLLLLLLLLLLLLLLLLLLLLY BAD KIND, I mean, horrible! Non stop......within one hour, I went 8 times, and A LOT every time. Not to mention, the whole weekend I probably went about 10 other times. And Monday, about 3 times. Then, the bad body aches came back, and (does anyone else get this?) when I touch any part of my body, it hurts. When I sit down it hurts because the chair is touching my body, when I lay down, IT REALLY ACHES because the bed touching my whole body, I'm extremely bloated, my muscles hurt, pretty much, everything inside of me hurts. Anyway, my question is, is it really possible that this is all happening from the gluten that I ate the Sunday BEFORE this past weekend? Right now, I'm living on applesauce and rice, maybe chicken soup for dinner. But I just feel so bad, like I did every day of my life before I stopped eating gluten.......what do you guys think? Thanks for any help!
  18. Wow! I'm so happy you guys remember me! And Matilda, yes, you're right about how I got diagnosed! You've got a good memory! Anyway, his hair is looking A LOT better. But I was just thinking, and this is the reason that he is try to change bad habits (just eating healthier for one)........my theory is that we all have a specific gene for 'bad' things. For example, some people have the gene for obesity, some for celiac disease (yeay! ha), and some for hair loss.....etc. etc. Well, I think it ALL comes down to what we put in our bodies, and nutrients and everything. The person who is obese wouldn't be AS big if they ate right, even though their cousin, or even parent, doesn't have to watch it at all and they are rail thin (I've seen this), and people with Celiac Disease can't eat gluten, (and from what I've learned, need to eat completely healthier ALL AROUND, not to be sick), and for someone with the hair loss gene, well, they wouldn't be completely bald if they ate the right, healthy foods......it might not be as thick as the pantene pro-V models, but it would not dissappear. I don't know, that's my theory. I've been so into health ever since this whole thing happened. (2 and 1/2 years ago exactly-probably longer, but more serious in the past couple years). I watch Discovery Health any chance I get, I read any health article I can get my hand on, I was even thinking about going to get my doctorate in Naturopathic medicine......anyway, thanks for your replies. Oh, since I brought up Discovery Health chanel, I wanted to bring this up. Probably wrong thread, but oh well. There was this little girl who had 'something' wrong with her. She couldn't gain weight and grow no matter what the doctors tried to figure out. (they still don't know til this day, or at least the end of the program). Well, they didn't bring up any testing for celiac disease, but that's besides the point right now. You'll NEVER GUESS WHAT THEY WERE HAVING THIS GIRL EAT TO GAIN WEIGHT!!!!! Go ahead, guess! 100% JUNK FOOD!!!!!!!!!!!!! FRENCH FRIES, CANDY, CAKE, HAMBURGERS, CHIPS, ANYTHING AND EVERYTHING PROCESSED, HIGH CALORIC AND UNNNNNNNHEALTHY! Can you believe this?!?!!? I was practically crying for this girl while I was on the couch.....my fiance was like, what is wrong with you?! I was like THEY ARE SO STUPID!!!! Okay, I'm not going to assume she had celiac disease, but COME ON! If you want to give the girl high calorie foods, AT LEAST GIVE HER HEALTHY ONES!!!!! Here is this little unhealthy, not growing, body not working right, girl............and they are shoving chemicals and man made junk in her mouth!!!!!! Actually, I was crying!!!!!!!! I could cry now! This is what really made me think seriously about getting my Phd. in Alternative medicine. How could things like this happen!?!?! Okay, way of subject, I could go on forever, but isn't that just the most insane thing you ever heard?!?!!?!!?!?!!? I'll be back soon to chat with you guys! I miss my Celiac home!!!!! You guys really are like family to me. It's sounds weird, but it's true. You are like my sisters and brothers (okay, mostly sisters) on here. More like my twins! (Or whatever insane number we would all be! haha)
  19. Wow! First I want to say I don't think I have posted here for like 4 or 5 months?! Crazy considering I used to live on here, all day long every single day of my life before and right after being diagnosed? Anyone remember me? hahah Anyway, I have a question for my fiance. He has been loosing his hair this past year.....not bald, but you can def. see a difference in it. Anyway, he also has had, and for a while might I had, much of the celiac symptoms. But of course he won't get tested for ANYTHING unless he is dying, so I convinced him to try gluten free for at least 2 months. So to my surprise, he actually IS doing it! Anyway, he's always had the 'D' problems, and always has some kind of weird rash on his, uhem.....backside, hahaha.......and many muscle pains throughout his whole body, the list goes on. Been to doctors, but they never say anything. He used to think he was lactose, but we all know how that goes.......anyway, I was just wondering if anyone has ever heard of going gluten free and it reversing hair loss.? It's been 2 weeks and his hair iiisss looking a lot better, but he also is taking vitamans now and using conditioner because I told him dry hair breaks easily and he was only using shampoo. Anyway, if you have any thought, I'd like to know! Good to be back to my celiac family, too!
  20. Okay, I just got officially diagnosed yesterday with IC. I've known that I had it forever, 8 years now and it kept getting worse. So I figured I should at least get the diagnosis and try some treatment. I just started elmiron last night and I REALLY REALLY REALLY REALLY hope that it helps. But the day before I got diagnosed, I also learned about a special diet for IC called the alkine acid diet. Foods are split up into two groups. A) alkaline foods-most fruits and veggies B.) Meats, proteins (most), starches and sugars. ON the diet, you are allowed 80% from the alkaline food grou and 20% from the acid food group. It is supposed to balance out the acid in your body and heal your bladder. Of course, you should always eat like that even after you are healed because if you are a person who's system creates a lot of acid, then you will likley get a 'sick' bladder again. It goes more into depth but I know I would explain it wrong. I also bought a book and I'm waiting for it.....I'm going to try this diet and also take the elmiron. If the elmiron gives me any side effects, I may get rid of it and just try with the diet. Has anyone ever heard of this diet?
  21. Okay, I just got officially diagnosed yesterday with IC. I've known that I had it forever, 8 years now and it kept getting worse. So I figured I should at least get the diagnosis and try some treatment. I just started elmiron last night and I REALLY REALLY REALLY REALLY hope that it helps. But the day before I got diagnosed, I also learned about a special diet for IC called the alkine acid diet. Foods are split up into two groups. A) alkaline foods-most fruits and veggies Meats, proteins (most), starches and sugars. ON the diet, you are allowed 80% from the alkaline food grou and 20% from the acid food group. It is supposed to balance out the acid in your body and heal your bladder. Of course, you should always eat like that even after you are healed because if you are a person who's system creates a lot of acid, then you will likley get a 'sick' bladder again. It goes more into depth but I know I would explain it wrong. I also bought a book and I'm waiting for it.....I'm going to try this diet and also take the elmiron. If the elmiron gives me any side effects, I may get rid of it and just try with the diet. Has anyone ever heard of this diet?
  22. Wow thanks everyone. Well, I went to the hospital yesterday because the pains in my back were SOOOOOOOOOO BAD I thought my intestines were going to erupt! So they checked me out, I told them about my bladder problems too and they checked for an infection, which of course, I didn't have. Then they explained that the pains I was talking about were where my colon is and they kept asking me, are you sure you didn't get gluten somewhere? are you sure? I said yes, I know that I didn't! Well, I got home with no answers but then started to really think about my symptoms. THe more I thought about it, the pains I was having, the back throbbing, hurting to the touch, shooting pains in legs, bad D for a day and now C, were actually symptoms of being glutened. I just haven't been glutened since right before the holidays in December! So I thought about everything I ate/drank and then decided to call this phone number of a new tea that I had. In the ingredients it didn't list gluten, but I thought why not call? So I called and they confirmed, yes, there is maltodextrin in the tea from gluten! It wasn't listed on there anywhere! Anyway, after all this, I have been glutened and didn't even recognize it. But I have also now learned that my bladder problems also get worse when I get glutened. Right now, I am just in pain.....living on rice cakes and applesauce and hoping this all goes away very soon.
  23. Thanks for replying. Do you get the same symptoms that I mentioned? And I'm even scared of water right now because I am so bloated, my stomach is so swollen, when I drink water, I get bigger and my insides feel tighter and for some reason when I go to the bathroom, it doesn't feel like it all comes out so I just put that much more water into my system only to create more bloating and pain! How long did it take for your 'flare ups' to go away? This is so bad. I haven't been normal since Sunday.
  24. I just saw a story on the History chanel about Hitler and how he was on so many drugs for his 'stomach, idigestion' problems which eventually lead to his all around health. (Body aches, constipation, 'D', gas, etc.)............They didn't say what his diagnosis was because I don't think he ever got one. He was just always taking tons of laxitives and pain killers and the whole story was about Hitler being 'Hitler' (the bad man we all know) because of his illness and possible side effects of all the drugs. It was a theory they were just trying to educate on. I just thought it was interesting.
  25. Just wanted to bring my post to the first page again........just in case someone who has IC see's it later in the day.
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